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Tuesday, June 25, 2013

Disappointed, Again

I had a great plan for today. First, this week is supposed to be my Anti-Procrastination/Catch-up Week - I decided on Sunday to set aside this week to get all the things done that I have been postponing for too long - the phone calls, e-mails, etc. that have been on my to-do list for far too long. And today, I was going to jump into that project. I went to bed last night feeling relatively good (for night-time) and motivated to hit that list today. I've also rededicated myself to trying to lose a couple of pounds and slim down a bit - my sweet tooth has been taking over lately! It's becoming super-hot and humid here in Delaware now, so my plan was to take an early morning walk (i.e. 9 am) before it gets too hot. So, I got up this morning, got dressed in cool, wicking shorts and shirt, ready for my walk.

So what happened?

I have a killer sore throat and a sore mouth, too. I suspect I've got another case of thrush, which crops up periodically ever since my 3-year long Lyme treatment. It's not bad enough yet to look really bad, but these are my early warning symptoms. Of course, the sore throat could "just" be a typical CFS crash, but my tongue hurts, too. So, I am taking it easy and saving what meager energy I have (I do still have to make breakfast for my son and his two sleep-over friends, run to the farm to pick up our weekly veggies today, and make dinner tonight). I am also taking lots of oregano and olive leaf (both potent anti-fungals) plus extra probiotic.

I should be used to this kind of last-minute change now, used to the disappointment of not being able to do what I want to do. In fact, I even came up with a name for days like this - it's a Plan B day. But, after 11 years, it is still disappointing to have to give up my plans. Despite how bad I am feeling (the aches are creeping in now, too), I am still yearning to take that walk in the sunshine and tackle that to-do list. sigh....

7 comments:

Hi Sue,Sorry to hear you couldn't do what you planned. This illness is full of disappointments as it is so unpredictable. I finally went to my Lyme clinic and now they are not sure I have Lyme at all, as only the ELISA was positive and not the Western Blot. So I have to have a MELISA test. I am very ill after going on a 5 hour journey to London. I hate resting! I hope you feel better quickly. Do you only use herbal anti fungals for your throat? Take care, Crumpet

Sorry to hear your trip wore you out so! Sounds like you are dealing with someone who doesn't understand Lyme testing very well. All of the Lyme tests are very prone to false negatives, but you can believe ANY positive test result. There is no need to confirm with a second test. There are many, many reasons why a Western Blot might be negative when Lyme is actually present.

Testing for Lyme is not fool-proof because of this tendency toward false negatives - the tests are only 1 piece of data for an experienced Lyme doctor to consider, along with history, exam, and presentation and pattern of symptoms. Even if both your ELISA and Western Blot were negative, you could still have Lyme - my own Western Blot was never positive, and I definitely had Lyme (and got rid of it!).

As for my thrush flare-ups, I take prescription antifungals, like Diflucan, when I need them for bad flare-ups. I actually took it for 6 months during my Lyme treatment while I was on a very powerful antibiotic because all the herbals weren't enough. But now, off abx, if I can notice the early signs and go hard on the herbals and probiotics, then I can sometimes head off a full-blown infection. I am doing better now, by the way.

I go through flare-ups of thrush too and have been fighting one off now for a few weeks, so far it hasn't come out but I know it's just waiting for the chance to do so. (I already took Diflucan as a precaution 2 weeks ago, but we'll see). I so know the disappointment you're feeling all too well so I'm sending you mega cyber (((hugs))), love and positive well wishes!!! (Been running into it a lot recently too).

Sounds like you are making the right choice to rest and not push through, despite 'plans'....I know, it's like after 11 years we should "be over it".....I actually find when I move from moderate severe to moderate mild that I'm harder on myself because there is more interaction with the world and seeing daily what I can/can't do compared to others. I hope this is a quick crashy....

Thanks for your reply Sue. I don't know anyone else who has ME/Lyme so it is nice to talk to you. I was surprised to be honest, I expected them to just give me treatment straight away. I also didn't expect to have to pay another £600 out :o( They are supposed to be the best (and one of only) clinics in UK and a lot of people there had travelled from abroad. I think they are confused because I got a diagnosis with 'Henoch Schonlein Purpura' (HSP) when I first got ill and that can also be triggered by insect bites, so they are doing a test to see if I have this certain bacteria usually linked to HSP. I still will feel like it is Lyme though if the tests come back negative. I guess there are other clinics abroad I could try. I will let you know what happens!I get thrush quite badly and herbal remedies don't work, but like you I might need the medicines first.I hope you are feeling better! My computer won't let me reply to your reply so that's why I commented under :o) Take care

Well, Tanya, probiotics are absolutely necessary anytime you take antibiotics - otherwise, you'll end up with a really messed up GI tract which affects the immune system, too...as it seems you have discovered! When you take antibiotics, be sure to take double the normal dose of probiotics and take them at least 2-3 hours away from each other (otherwise, the abx will kill off the good bacteria in the probiotics, too). Also, probiotics work best on an empty stomach.

When I'm not on abx, I still take probiotics daily, just because the research is so solid. They not only help to maintain a healthy GI system, but roughly 70-80% of the immune system is in the GI system, so they are supposed to help with immune function, too. It's not that I noticed any big difference when I started taking them (over 10 years ago), but that the research and logic behind them is so strong.

If you took those strong abx without taking probiotics, it might take you some time to build the good bacteria back up in your system. Also, there are many different types of probiotic, so experiment to find which ones seem to help you the most. I take All-Flora, a non-dairy based blend of 10 different probiotic strains, plus saccharomyces boulardii, a strain that targets yeast overgrowth....which might be good for you after all those abx!

I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.

About Me

I'm a freelance writer who loves to read and cook. My husband and I have two sons, and we all enjoy travel and being outdoors. My older son and I both have chronic illnesses, but we focus on finding joy in every day!